When we originally talked with our surgeon about Sam’s treatment plan, we discussed having his lip and nose repaired first, and his palate repaired 4-6 months later. That put us at July or August for palate repair.
Imagine my surprise when at the eight week post-op follow up for Sam’s lip and nose surgery, the surgeon said that his recovery was miraculous and that we could go ahead and do the palate surgery as soon as possible.
As Soon As Possible? Aaack!
After the initial shock wore off, we figured it was a really good thing. He could get the surgery and recovery behind him before the summer, and then be free to enjoy swimming, traveling and playing.
So on April 27th, just 9 weeks after lip/nose surgery, Sam went into the hospital once again.
Entering the hospital for Sam’s first surgery was a piece of cake. He had never been to this hospital before and didn’t have a clue what was about to happen. He waltzed in without a care in the world.
This time, not so much. He remembered what happened the last time we were here and he wasn’t keen about staying once we arrived at 5:30 AM. (Yes, 5:30 AM. Insane. Who is awake enough to do surgery at that hour of the morning?)
Just prior to surgery, the surgeon stopped by to go over details and answer last minute questions. Can I just say we.love.our.surgeon! He has the most awesome bedside manner in addition to being a genius at his work.
We were allowed to walk Sam all the way down to the ER. Even though he was loopy, he still cried when I handed him off to the OR nurse. Broke my Mommy heart.
The actual surgery took about 3 hours. It started with the insertion of ear tubes to drain fluid and restore Sam’s hearing. After that, the palate was closed. Our surgeon describes this process as operating inside a matchbox because of the confined space he has to do everything that he needs.
While the surgeon was doing his thing, we hung out in the family waiting room. People always ask if was nervous or worried about the surgery. I can honestly say that I never have been.
Maybe I should be more nervous. Part of me feels like a bad mom for not sitting there wringing my hands and pacing the floor. But I really, truly have all of the confidence in the world in the doctors treating our little guy. I feel that he is in capable hands. Besides there is absolutely nothing that I can do while he is in the OR. Worrying doesn’t make the surgery more successful.
While Sam was in surgery, Molly and I cuddled on the couch, watched Bambi and read some books. The time seemed to go by quickly and before I knew it, the surgery was over and we were talking with the doctor.
It was at this point that I started chomping at the bit to get in and hold my baby. The doctor’s job was done and now it was my turn. I was the one that my baby needed. It was my task to help him heal.
Like his last surgery, all Sam wanted to do was to lay on my chest. I was happy to oblige.Sam laid on me for hours. Tony and Molly stayed for a while, but it was a school day for Molly and we wanted to keep her routine as normal as possible. So around noon the two of them took off and Sam and I spent the afternoon cuddling.
I am not whining, seriously, but sitting in one position holding your child to your child for hours on end feels is hard work. I really tried to minimize my movements so that he wasn’t in any discomfort.
By the time Tony arrived with some dinner for me, I felt like I do when we drive 20 straight hours to Florida. Worn out, sore and no feeling left in my, well, posterior area!
Sam, as with his previous surgery, was a soldier. They gave him morphine right out of surgery and then one more dose four hours later. After that, all he had was Tylenol to manage his pain.
When they first told me that this was his pain management plan I was shocked. Tylenol? I give him that when his little skinned knee hurts. This is major surgery, for crying out loud!
But the Tylenol worked. As long as it was delivered every four hours, Sam was never in pain.
Later in the evening, it was time for Daddy to leave, so Momma returned to cuddle duty.The first 24 hours post surgery were tough. The nurses (God love them for their patience and caring!) were in the room checking vitals every hour. Sam screamed through each and every one. Poor baby. He hated having his blood pressure checked. He hated having his leads checked. He even hated having his temperature taken.
When I say hated, I mean HATED! He screamed, arched, pushed, kicked and cried the biggest tears each and every time that the nurses did their thing for three straight days. I think that his month long hospital stay in China really left some deep-seeded fear of hospitals and medical professionals. It broke my heart every time I had to hold his flailing limbs still so the nurses could do their required checks.
The string coming from Sam’s mouth was actually sewn through his tongue. It was then taped to the side of his face. If at any time during the night Sam had trouble breathing, the sting could be pulled which would move his tongue and open an airway for him to breath. Luckily that never happened.
The morning of Day 2 the doctor came by and removed the tongue stitch. Sam looked a lot better, but sure didn’t feel it. He didn’t eat or drink anything at all for the first two days. He was hooked up to an IV so he stayed hydrated, but the staff really wanted Sam to get at least some liquids down. No such luck.
Let me pause for a moment to recognize my mother-in-law. She came and stayed with Molly and Tony for 3 weeks while I was in China adopting Sam. Shortly thereafter she took care of my niece (her granddaughter) for 6 weeks while she recovered from a brain injury. Once my niece was on the road to recovery, she returned to our house to stay with Molly while Sam had his second surgery.
She is amazing! She gives of herself so willingly to make sure that her grandchildren are well cared for and loved. Molly was thrilled to have Grandmom back and we felt such relief knowing Molly was in capable hands while we were at the hospital.
My MIL rocks. Enough said!
Okay, back to the story…During night #2, Sam’s IV pulled loose. Uh oh! That meant Day 3 was do or die day, so to speak. Sam had to start eating and drinking or he would need to have his IV reinserted without anesthesia.
Sam came through! He started drinking little sips of juice and water and then graduated to Strawberry milk. Later in the day he even felt good enough to go down to the playroom with the recreational therapist.
While in the hospital, there was another patient who was adopted from China having a cleft surgery. This little girl just happened to be Molly’s age and she and Molly became fast friends. Molly enjoyed playing with Imerie and I enjoyed talking with her mom. Sam enjoyed tagging along with the girls. It was one big party!Having a child adopted from China with the same need, allowed Imerie’s mom Valerie and I to click instantly. We share a bond of understanding and it quickly opened up a path to friendship. It’s amazing the way God puts just the right people in your path at just the right time.
The morning of Day 4 saw Sam feeling much better and ready to eat soft foods. Breakfast consisted of pancakes, mac and cheese and yogurt. The doctors gave him two thumbs up and brought the release papers. Woo hoo!
Sam returned home, and I wish with every fiber of my being that I could write that Sam’s surgery was an overwhelming success.
But it wasn’t.
Three days after we cam home I saw blood on Sam’s pillow. I kept thinking positively that all was well and this was just some drainage.
Four days after surgery while Sam was falling asleep he smacked his lips. I could hear the air being pushed through his nose. Not good.
Five days after surgery and you could see a small fistula (hole) in Sam’s palate repair.
Six days after surgery, the palate repair failed, leaving a wide whole in Sam’s palate.
We were devastated.
At Sam’s follow up appointment, we assessed the damage. A large opening through both the soft and hard palate up through the nose left Sam without the ability to control the flow of air through his mouth. As a result, he cannot build enough pressure to make most of the consonant sounds. Heavy sigh.
Where does that leave Sam? Well, not talking, and in need of another surgery. The surgeon is going to check how Sam’s palate looks in August then make a decision about the timing of his next surgery. It will most likely be between August and November. Another heavy sigh.
On a positive note, Sam is still the same happy, easy going, fun-loving and personable boy around. He spreads joy everywhere he goes. He is eager to learn and use sign language which is such a blessing. His signing has really taken off and he now knows around 45 signs. Which he loves.
Sam continues to be my hero. Strong, resilient, loving and the most miraculous person I know. We are the luckiest family in the world. Period.